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24 October 2011

Not what I thought I'd hear.

Dear Jennifer,

Thank you for the latest photos of Liam and the information.

I am sorry to give you the information that at this time, the doctors
feel he is still too young and small to undergo the procedures.
They prefer to have the child be about 5 for either the bone marrow or
adipose. However, they will reconsider in about a year's time.

Please do not be discouraged or give up. Your son is very blessed to have you.

Kindly,
R

This was my reply back:

Dear R. and Doctors,

I have received your email regarding Liam and that I should wait another year to come however, I respectfully ask you to reconsider. I feel some insight into Liam might help.

I never thought stem cells were a possibility for Liam because of the extraordinary cost. Even so, we prayed about it and researched it and that led us to you.

We were adamant about not trying HBOT but saw God do a 180 on us when we encountered Bob on an HBOT board. Little did I know that he ran that board. I had just joined in order to get some more information, decided against it (sounded like snake oil), then both my husband and myself changed our mind in an instant (separate from each other) after reading something Bob had written.

In thinking that stem cells were out of our possibilities, but knowing how God had made 80 dives of HBOT happen (we had those paid for completely by friends) I decided to see if going forward with the idea of stem cells could be made possible. We had no extra money and no chances of any coming in. But God made the impossible possible. He allowed the monies needed to pour in and we raised what we thought we never could in a few months time. We now have everyone's money, sitting here, with everyone anxious for Liam to get stem cells. The first obstacle had been accomplished! The second would be Liam's weight. I have watched my son go from failure to thrive to "obese" in only a 6 month time frame. The largest hurdle of all, getting fat on Liam, has happened. God has allowed the money and the weight to pour in. We have been so very blessed!

You state that we should wait another year until he is 5 so he is older and bigger. I can understand your age requirements. Yet if in waiting for him to be 5 is because he is only 4, I can state that he is the size of a 5 year old already. He actually wears size 5 clothing in fact! I tell you he is not a small child.

Also, because Liam has low muscle tone, he is unable to hold his head up well. That means he is in his chair or on the floor at home at all times. He can not sit independently. Traveling with him as he gets older, will undoubtedly be extremely difficult because airlines are not able to accommodate a person who needs to be in their wheelchair while in flight. While Liam is younger it will be much easier to fly with him as he will still be able to use an insert in the airplane seat to allow him to fly. As he gets older, that insert will be too small for him to use and I'm not sure how we could even be able to fly at that point.

I understand if you still do not want us to come. It is after all in God's hands entirely and if that is the decision He's made I'll just have to figure out what's going on around here and accept it! =) I just felt I needed to respectfully disagree with your decision due to Liam being the size of a 5 year old already and the way God has paved the way for us to come. I don't believe in accidents and the journey he has brought us through has led us to where we are now.

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This blog has journaled the fallout of giving birth to a micropreemie & how it's affected everything in our life from marriage & family, to friends & church & beyond. Liam's early arrival gave him a list of diagnoses like CP, CVI, & ROP. His most impacting special needs are his mixed tone ataxic/athetoid-like cerebral palsy & vision issues. He's non-verbal but teaches us all. Follow along as we try to live this crazy normal, knowing God is the author and he isn't finished writing this story.